Still Writing About Sneakers, Just in a New Way
excerpt from my recent article on FinishLine.com:
It’s 4 pm on the Fourth of July and Chloe R. is in full distress. Everyone at the BBQ freezes as Chloe struggles to breathe and Leslie, Chloe’s mom, immediately bursts into action.
In less than ninety seconds Chloe is stabilized next to the air conditioner with a blanket and her iPhone, strapped to the portable nebulizer that has saved her life over three hundred times across the ten short years of her life.
She giggles and the anxiety slowly evaporates from the room as the crowd starts shuffling around. It’s as if someone has pushed pause on the tape of her life, but it’s Groundhog Day and these days, Chloe R. knows exactly how to change the loop.
Aside from the emergency nebulizer, there is the airway clearance vest (used three times a day to clear the excess mucus from her respiratory system), four preventative medications to combat bacterial infections from forming in her lungs and her nifty inhaler – which tucks neatly inside of her custom, laser-etched handbag.
Chloe was diagnosed with Primary Ciliary (SIL-e-ar-e) Dyskinesia (dis-kih-NE-ze-ah) aka PCD at six years old but has been suffering from the rare disease since birth.
Jazerai: When you fall, you fall hard. Most of us stumble, but you seem to pick yourself up pretty quickly and rock on. Walk me through that moment in your brain where you feel like, ‘Oh man, things are about to go very left.”
Chloe R.: I’m going be totally honest, it’s fear. I mean, I already know that I’m not going to die, I’ve been through this a long time. I know what to do – but I’m still scared, every single time that it happens.
Jazerai: What do you do to push through that fear?
Chloe R.: I tap into something more. For me, that’s God. Faith. Faith is the only thing that gets me through this. God telling me, ‘It’s going to be fine. Because YOU’RE going to be fine. Everything is fine…”
Her voice drifts off, falling into a whisper filled with a solemn calm normally developed far beyond her years. She pauses.
“You know what Titi Jaz, everyone says they’re okay.”
Jazerai: Maybe they are?
Chloe: They say they’re okay, but they’re really not okay – and they WOULDN’T be okay. The truth is that most kids wouldn’t know what to do if they had this. Take all of my friends, for instance. Even the home schooled ones have at least one sport that they’re doing, like, all the time. Me? I sit on the sidelines.
Now, imagine if someone told them today, “You can’t do that.” “You can’t run across the field.” “You can’t go on the trampoline.”
What if all of a sudden, everything was dangerous. Would they really be okay then? Other kids don’t know what real struggle is yet and that’s why they don’t know how to push through things. They have nothing to push through.
Jazerai: But you do, because of the years you’ve spent wrestling with PCD. So, in a way – it taught you something.
Chloe: I learned that sometimes, it’s just about getting through a tough time.
(click below to read the rest!)